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Social Support in Cyberspace: Lessons Learned
The lessons learned from the implementation of phase one of Women to Women (WTW1), a research-based computer outreach program for rural women with chronic illness, and their influence on the development of phase two of Women to Women (WTW2) are discussed in this article. The changes implemented in WTW2 included moving from the FirstClass delivery platform to WebCT; increasing the intra- and interdisciplinary nature of the team by adding nurse experts in Web skills and women’s health and non-nurse colleagues in family finance and nutrition; expanding the geographical area to be served from Montana to adjoining states; developing health teaching units that harness the internet as the major source of ever-current health information; including a control group in the study design; and selecting more pertinent, repeated measurement instruments to assess psychosocial variables.
Social support has a positive influence on an individual’s experience of adapting to and dealing with a chronic illness (Liena-Kilp, Juoto, & Katajisto, 1998; Tilden & Weinert, 1987; Uchino, Cacioppo, & Keidolt-Glaser, 1996). This is not surprising since social support provides opportunity for intimacy and nurturant behavior; being an integral part of a group; reassurance of worth; and material/informational help (Weiss, 1969). Additionally, health education is a key factor in adaptation to a chronic illness (Fries, Koop, Sokolov, Beadle, & Wright, 1998; Lorig, Mazonson, & Holman, 1993; Michael, 1996).
According to Caplan (1974), an important source of support is the assistance provided by family, friends and neighbors. One effective way to mobilize support for persons experiencing long-term illness and their family members is through self-help groups. However, in rural areas, small population bases and geographic barriers, such as distance, travel time, and weather conditions, limit access to face-to-face support groups and health information (Cudney & Weinert, 2000; Heileman & Lackey, 1990). To overcome these barriers, creative mechanisms, such as computer outreach support and education groups, are being implemented.
One such outreach endeavor is the Women to Women (WTW) Project, a research-based computer intervention developed at and operated by Montana State University–Bozeman College of Nursing. The overall goal of WTW is to provide social support and health information to rural, chronically ill women via computers to enable them to better manage their long-term illnesses.
Women To Women: Phase One
Phase one of Women to Women (WTW1) began in 1997 (Weinert, 2000). The goals were to: a) implement health promotion strategies delivered in a social context, via a telecommunication system, to isolated rural women who have chronic illnesses, and b) evaluate the impact of participation in this intervention on their psychosocial health. Over the 3-year duration of WTW1, a convenience sample of 150 women with cancer, diabetes, multiple sclerosis, or rheumatoid conditions participated in five cohorts. Each cohort consisted of 30 women randomly assigned to two groups—15 women in a computer-intervention group and 15 in a noncomputer-assisted group.
The computer group received the intervention for five months through the use of personal computers and FirstClass, a secure network conferencing system. Participants could use the system 24 hours a day. Through the FirstClass system, the computer group had access via a phone-modem connection to a variety of components: Conversation (for sharing supportive messages); HealthChat (for discussion of structured, predetermined health topics); Mailbox (for private messages); and Resource Rack (for reading newly posted health resources and information).
While the noncomputer group did not participate in the computer activities, they did receive hard copies of the online Resource Rack materials. Both groups received a three-ring binder at the beginning of the project containing preselected health articles, a map showing the locations of each group’s participants, biographical information and pictures of the WTW research team members, and a project newsletter. A telephone interview was conducted by the nurse monitor to help retain participants through personal contact and assess major life changes before mailing each of the five repeated-measures questionnaires. The study period per cohort lasted 10 months. A detailed description of the project was previously published in this journal (Weinert, 2000).
The purpose of this article is to discuss the lessons learned from WTW1 and the directions for change they indicated for the second phase of the project (WTW2). The areas of research to be discussed are: research team composition, technical hurdles, health education strategies, study design, and measurement instruments.
Research team composition
To develop and deliver the WTW1 telecommunication intervention, a collaborative network was required. A core research team was assembled, and working partnerships were forged with university resources, voluntary community agencies, and content experts.
The core research team, which consisted of a nurse monitor, computer specialist, administrative assistant, student research assistants, and principal investigator, was responsible for the development and monitoring of the support and health education parameters of WTW1. The members of this group developed the intervention plan, prepared the workbook materials, responded to technical or implementation problems, and collected and analyzed the data.
Montana State University–Bozeman Burns Telecommunication Center (BTC) housed the FirstClass system. BTC staff were responsible for the technological aspects of delivering WTW1. The staff assisted the core team in learning the FirstClass system, installed the project on FirstClass, provided technological support to staff and participants, and developed a program to track user statistics.
Community-based health organizations were valued partners and included such groups as Montana chapters of the Arthritis Foundation and the National Multiple Sclerosis Society, who supported the study through grant funding, promoting the study to their members through newsletters and special mailings, and supplying educational resources. The voluntary health agency staff had access to the program from their offices, thus giving the study participants direct access to resources provided by the health agencies.
Added expertise was tapped to increase the knowledge base for the participants and the core team. Interdisciplinary experts in nutrition and women’s health were invited to participate in HealthChat, and a statistician and qualitative analyst were recruited to help the core team with data analysis. Some of the participating women’s comments on the technology survey regarding the experts’ participation was, “I learned new things from them and am grateful for their input” and “...would like to have had more input from [them].”
Lesson learned about partnerships: An early lesson learned was that productive partnerships provide the needed resources to expand project applications. In WTW2, this lesson was applied by keeping the core team intact, continuing the working relationships with the voluntary agencies and BTC, and expanding the interdisciplinary nature of the team. Continued collaboration with BTC was particularly essential because their technicians assisted the research team in adapting to the university’s upgrade from the FirstClass platform to WebCT. In response to the participants’ positive evaluations/suggestions and other factors related to the design of WTW2, the content experts in nutrition and women’s health became coinvestigators, and Internet and family finance experts were added to the research team. Since the women seldom contacted the voluntary agency staff members and because of concerns about the security of the computer system, the focus of agency participation was shifted to assisting with recruitment and sharing of informational resources.
Initial concerns over the feasibility of implementing WTW were related to delivering the project to rural areas. The three major hurdles anticipated were: ability of participants to learn the FirstClass system, antiquated rural telephone systems, and the research team’s ability to troubleshoot problems.
When the pilot study commenced in 1995, computers were not yet considered a household necessity, and in 1994, only 22.1% of homes in rural areas had a computer (U. S. Dept of Commerce). Training noncomputer-literate participants to use a computer and the FirstClass system was anticipated to be a challenge. When asked to rate their computer skills on a scale of 0–10, with 10 being highly computer-literate and 0 equaling no computer literacy, the women’s mean score was 5.12. Nearly half (41.7%) of the women did not own a computer.
Each participant in the computer group received an in-home training session from a project staff member. The effectiveness of this training was assessed in a mailed technology survey sent to the computer group at the end of the computer intervention. Most (95.7%) considered their training to be adequate, and only 8.3% reported frequent problems with the FirstClass system. The in-home training session also was found to be a confidence-builder; one woman said, “I came away from our session thinking, ‘Even I can do this!’”
Because participants connected to the FirstClass system using a telephone modem, there was concern that issues with rural telephone systems, such as high winds, static, and party lines, would discourage the women from participating. This concern was unfounded as rural participants were accustomed to losing phone connections and having to redial. One incident of static occurred and was promptly remedied by the local telephone company. Hard-wired phones and party-line service no longer existed in Montana, even in remote locations.
The final hurdle was the question of how to troubleshoot technical problems. Long distances prohibited return visits to the women’s homes to correct problems; the distance traveled to conduct the in-home training sessions averaged 3,448 miles per cohort, which is more than 500 miles farther than the distance between the east and west coasts of the United States. To address this problem, the women had direct access to the WTW project office and the BTC technician via a toll-free number. Although the number of calls was relatively small, participants, on average, rated the importance of having the project staff available via the toll-free line 3.94 on a 5-point scale. The printed computer guide that included screen visuals illustrating detailed instructions for navigating the FirstClass system and other information relevant to engaging in the computer-based intervention were rated, on average, “quite important” (3.35), and may have contributed to the low number of calls for technical assistance. Revisions were made to the guide for WTW2 to make it even more user-friendly.
Lessons learned about overcoming technical hurdles: It was found that women with fairly limited computer skills could learn to use a computer platform such as FirstClass in a single home visit; rural telephone systems in Montana were not a deterrent to a computer-outreach program; and user problems could be satisfactorily solved via access to toll-free telephone assistance and provision of a printed computer-use guide. Having successfully hurdled the anticipated technical barriers, the research team moved seamlessly from WTW1 into WTW2, and had the confidence to add participants from the adjoining states of Idaho, North Dakota, South Dakota, and Wyoming.
Health education strategies
The health education component of the program was provided through printed materials and HealthChat, a structured discussion group. Unlike Conversation, which allowed free- flowing support among the women, HealthChat was more structured and led by a nurse monitor.
Background health information for the HealthChat discussions was provided through hard-copy articles chosen from consumer magazines and voluntary agency publications. Discussions addressed four major health-related topics (getting the most out of life, relating with others, caring for self, and communicating with healthcare providers) selected by research team members. The nurse monitor provided stimulus for HealthChat discussions by posting weekly questions. For two of the “caring for self” subtopics (nutrition and women’s health), content experts were invited to participate in HealthChat (Cudney & Weinert, 2000).
The HealthChat component was evaluated based upon responses from the technology survey. The women in the computer group valued getting individual responses to their general questions from the experts in nutrition and women’s health. They also wanted to know more about specific topics, such as remaining mentally healthy, complementary therapies, exercise, stress management, and health insurance. One woman commented that with the WTW printed materials and Resource Rack, she was able to access information she would otherwise never have had. Another shared an illuminating idea about improving access to health information: using resources to be found on the Internet.
Lessons learned about providing health information: Access to accurate, constantly updated health information should be available 24 hours a day, 7 days a week to those trying to adapt to and manage a long-term illness. In WTW1, health information was limited to the articles provided, postings on Resource Rack, and HealthChat discussions. For WTW2, the idea to access the health information available on the Internet has been implemented. The time-limited Resource Rack and bound journal articles have been replaced with online health teaching units. During the 5-month computer intervention, the women are taught to access and evaluate information on the internet via a 2-week online “Web Skills” study unit, which is then followed by 3- or 4-week health study units on “Living with Chronic Illness,” “Nutrition,” “Women’s Health,” and “Family Finance.” These topics incorporated the subtopics that the women identified in the WTW1 technology survey as being important. Concurrent with each of the health teaching units is an expert-facilitated Health Roundtable, an asynchronous chatroom where the women discuss issues, explore resources, and share advice.
Initially, the intent was to treat the computer group and the noncomputer group equally. It was theorized that any change in the outcome variable could then be attributed more closely to the computer intervention.
As the preliminary analysis was undertaken, the anticipated differences between groups on the psychosocial outcomes were not as pronounced as was anticipated. Unexpectedly, comments from noncomputer group participants indicated a sense of support and encouragement simply from being a part of the project. Although they spoke to the nurse monitor just five times during the project, they had responded positively to the empathy displayed by the nurse monitor. The research team had underestimated the supportive influence of these contacts. In effect, the noncomputer group received a mini-intervention.
Lessons learned about study design: To distinguish more accurately the impact of two levels of intervention from no intervention, the WTW2 design needed to include three study groups. They are: 1) a mediated intervention group (Internet access, expert-guided health teaching modules with facilitated discussion [Health Roundtable], and self-help support group [Koffee Klatch]); 2) an independent intervention group (self-guided internet access); and 3) a control group that receives no intervention. To eliminate the inadvertent provision of support associated with telephone contact with a nurse, the five telephone interviews were dropped from the protocol and any prompts or inquiries that require calling the women are done by trained student researchers. Since the intent of the telephone interviews had been to assist in retention, the size of the groups was increased from 15 to 20 in WTW2 to accommodate for a possible increase in the attrition rate.
An important task in the planning of a successful study is the selection of the tools to accurately assess the variables of interest. Repeated measurement instruments for WTW1 were chosen on the strength of their psychometric properties, theoretical fit, and amenability to change grounded on the computer-based support intervention (Weinert, 2000); (See Table 1).
As the qualitative data produced in Conversation and HealthChat were being analyzed, new insights were gained into the psychosocial domains that were being affected by the women’s participation in the intervention. Social support continued to be seen as important, and the new domains of self-efficacy, self-esteem, and empowerment were identified as being key psychosocial health indicators of the individuals’ potential to respond to the demands of a chronic illness. The demands of chronic illness were translated into feelings of stress, depression, and loneliness. Further processing of the project data, a literature review, and expert advice led the research team to adopt the concept of adaptation as an overarching framework for the study. “Adaptation to a chronic illness is a complex process and implies a balance between the demands of the situation and the ability of an individual to respond to the demands” (Pollock, Christian, & Sands, 1990, p. 300).
Lessons learned about choice of measurement instruments: The domains of psychosocial health needed to be expanded, and the study’s conceptual emphasis required a shift to a stronger focus on adaptation. Findings from the data analysis, along with the conceptual shift, difficulties encountered in scoring and interpreting the PAIS, and the length of the Quality of Life Index resulted in removing them from the study. The Social Readjustment Scale (Holmes and Rahe, 1967) was retained as an indicator of major life change, the PRQ85 (Weinert, 1987) was replaced with the new version, the PRQ2000 (Weinert, 2003) as the measure of social support, and a single item was selected to rate quality of life. Additional measures of self-efficacy, self- esteem, empowerment, stress, depression, and loneliness were added to the repeated measures battery.
The focus of this discussion was on the process of taking the lessons learned from phase one of WTW and utilizing them to expand, enhance, and improve phase two. Based on the lessons learned from WTW1, changes were made in the project, including moving the delivery platform from FirstClass to WebCT; increasing the intra- and interdisciplinary nature of the team, expanding the geographical area to be served from Montana to adjoining states, developing health teaching units that harness the Internet as the major source of health information, using a study design that incorporated a control group, and selecting more pertinent instruments to assess the psychosocial variables associated with adaptation to chronic illness. Funding was received, and WTW2 is underway. The overall goal of the WTW project remains the same: to enhance isolated, rural, chronically ill women’s potential to adapt successfully to their long-term illnesses.
What is the relevance of WTW to rehabilitation nurses? The design of WTW and the knowledge gained from implementing the program can serve as a model for a variety of creative rehabilitative approaches to help those dealing with life-long health challenges. Although this project was designed for those who are geographically isolated, it also would be appropriate for urban dwellers who are socially isolated because of permanent physical and psychosocial disabilities. It requires only nurses’ imagination and creativity to adapt the many computer-based techniques available today to better meet their clients’ needs beyond the doors of the hospital or rehabilitation center.
Funding for the Women to Women Project was provided by the U.S. Department of Agriculture; the National Institutes of Health/National Institute of Nursing Research; SC Ministry Foundation; American Cancer Society; U.S. West; Montanans on a New Trac for Science; Montana State University-Bozeman College of Nursing; American Association of Diabetes Educators; the Arthritis Foundation; and the Montana Chapter, National Multiple Sclerosis Society.
About the Authors
Shirley Cudney is a retired associate professor, Montana State University–Bozeman College of Nursing. Charlene Winters is an associate professor, Montana State University–Bozeman College of Nursing. Clarann Weinert is a professor, Montana State University–Bozeman College of Nursing. Kerri Anderson is a project coordinator, Montana State University–Bozeman College of Nursing. Address correspondence to Clarann Weinert, Montana State University–Bozeman College of Nursing, P.O. Box 173560, Bozeman, MT 59717-3560, or via e-mail to firstname.lastname@example.org
Cudney, S., & Weinert, C. (2000). Computer-based support groups: Nursing in cyberspace. Computers in Nursing, 18, 35–43.
Derogatis, L. (1986). The Psychosocial Adjustment to Illness Scale (PAIS). Journal of Psychosomatic Research, 3(1), 77–91.
Ferrans, C., & Ferrell, B. (1990). Development of a quality of life index for patients with cancer. Oncology Nursing Forum, 17(3 supplement), 15–19.
Fries, J., Koop, C., Sokolov, J., Beadle, C., & Wright, D. (1998, March-April). Beyond health promotion: Reducing need and demand for medical care: Health care reforms to improve health while reducing costs. Symposium, Health and Medical Care in the Year 2005, Nobel Forum, Karolinska Institute, Stockholm.
Heileman, J., & Lackey, N. (1990). Self-identified needs of people with cancer at home and their home caregiver: A descriptive study. Oncology Nursing Forum, 17, 907–913.
Holmes, T., & Rahe, R. (1967). The social readjustment rating scale. Journal of Psychosomatic Research, 11, 213–218.
Leino-Kilpi, H., Luoto, E., & Katajisto, J. (1998). Elements of empowerment and MS patients. Journal of Neuroscience Nursing, 30, 116–124.
Lorig, K., Mazonson, P., & Holman, H. (1993). Evidence suggesting that health education for self-management in patients with chronic arthritis has sustained health benefits while reducing health care costs. Arthritis and Rheumatology, 36, 439–446.
Michael, S. (1996). Integrating chronic illness into one’s life. Journal of Holistic Nursing, 14, 251–267.
Pollock, S.E., Christian. B.J., & Sands, D. (1990). Responses to chronic illness: Analysis of psychological and physiological adaptation. Nursing Research, 39, 300–304.
Sullivan, T., Weinert, C., & Cudney, S. (2003). Management of chronic illness: Voices of rural women. Journal of Advanced Nursing, 44(6), 1–9.
Tilden, V., & Weinert, C. (1987). Social support and the chronically ill individual. Nursing Clinics of North America, 22, 613–620.
Uchino, B., Cacioppo, J., & Kiecolt-Glaser, J. (1996). The relationship between social support and physiological processes: A review with emphasis on underlying mechanisms and implications for health. Psychological Bulletin, 119, 488–531.
Weinert, C. (2003). Measuring social support: PRQ2000. In O. Strickland & C. DiIorio (Eds.), Measurement of nursing outcomes: Vol. 3. Self care and coping (pp. 161–172). New York: Springer.
Weinert, C. (2000). Social support in cyberspace. Rehabilitation Nursing, 25, 129–135.
Weinert, C. (1987). A social support measure: PRQ85. Nursing Research, 36, 273–277.